Hi there
My son is 28 and lives in a residential setting about 2 miles from where I live. He is autistic and also has complex mental health issues. He is turning 29 on the 1st May and I am looking for some advice.
Right now, he is refusing to go into any of the communal areas of his house because he is petrified of catching the virus including the kitchen, living areas and garden. There are about 8 other residents there with varying issues. There is 24/7 support staff. At best pre coronavirus he sometimes prefers to be on his own and spends a lot of time in his room. He goes through phases where he doesn't spend any time in the rest of the house. He is also very OCD and doesn't like anybody touching any of his things. He has a fridge in his room and refuses to put anything in the communal fridges. It took a lot of work to get him to cook or put stuff in the oven in the house. Now he won't do this at all. So his father (we are are not together) and I do daily meals on wheels and take him out for a long walk every day. We are being very strict on social distancing and so is my son because he is so petrified. Other than this he is spending 21/22 hours a day in his room. Some could say this is good because there is less risk but there is also a concern for his mental health. His sleeping pattern has always been problematic and sometimes he prefers to be up all night and asleep all day. Less time in the real world. This is what he is doing at the moment. He feels its safer and less risk. At the moment we are managing and he is reasonably stable. There have been a few difficult days and his mood can change very quickly. We have got into a bit of a routine where he wakes up at 4 or 5pm in the afternoon, his father goes over and him out for a walk and then I go over and take him some food. I dont go into the house, we sit in the driveway, usually me in the car and him standing up. This way he is getting two visits and being out of his room for longer. We are obviously permitted to do this providing essential food and exercise. He will not allow any of the support workers to prepare him food in the communal kitchen because of the virus. Sometimes he will walk to my house which is about a 15/20 minute walk from his house and we will walk from there but he is not allowed into my house. Sometimes he will walk with his father to my house to collect my dog and they will go for a walk. Sometimes just walking with him can be problematic if he gets agitated.
It is his birthday and I suggested to staff that his father and I could come at the same time, bring a couple of chairs, some balloons, cake and some food and we could sit in the driveway for an hour or two tucked round the side. It is a fairly big driveway. The managers have said we can't do this for a few reasons. Firstly because it could be perceived as a gathering. Secondly because they are encouraging other residents to stay inside and it sends the wrong message to them. Some of whom can be challenging about going out. Thirdly because if other residents come outside staff cant stop them and they might not be as compliant with the 2 metres social distancing. I have not suggested a rave in the driveway with loud music. What I have suggested is really no different to what we are doing now, the difference being that both his father and I will be present and we have a couple of chairs so we can sit down rather than stand up. When I go to the house and sit in the driveway in my car talking to my son, sometimes other residents come to the front door and we have a chat with them. We do this with staff too. Sometimes there is some overlap with his father still being in the drive with him after walking with him and going back to the house and me arriving with food. Generally I am taking food and his father is walking with him. I have a few injuries so I cant walk with him as far as his father can. Because of the increased time he is spending on his own in his room the longer he is out walking the better. As parents we are doing everything by the book and following all the guidelines strictly. Without the additional stuff we are doing right now, things would be very difficult for my son. It is very hard work but obviously we are doing what we can to keep him as stable as possible. We could take him to a remote field somewhere and do exactly the same thing away from the house. I am confused as to why this cannot be allowed given what we are suggesting is withing the boundaries of where he lives and not too different to what we are already doing. Sometimes my elder daughter drives me to his house when i deliver food so he can see a different face. Again all within permitted guidelines.
I would really appreciate your views on this or perhaps any other suggestions/ideas for what we can do.
Thanks so much.
